The Secret Backpack: Disability, Diversity, and My Perspective on Privilege

Hi, I’m Tommy, and I’m a current college student living with Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a condition affecting circulation with some nasty symptoms, such as dizziness, brain fog, fainting, chronic fatigue, and gastrointestinal stress. POTS is categorized as a chronic illness, meaning it does not often go away over time. To live with POTS, one has to develop a lifestyle where they can function despite their symptoms. Today, I’ll be talking about some of the pains and gains I’ve experienced because of POTS, and I’ll also be touching on what I view as the hidden powers of challenges, disability and diversity. I believe everyone can relate to this post in some way and it can be thought-provoking and/or put a smile on your face. Enjoy!


When I read the famous Spoon Theory post by Christine Miseranido, I realized using spoons as an analogy was an incredibly enlightening way to explain chronic illness to someone. For those that are unfamiliar, the Spoon Theory is a disability metaphor and expression used to explain the reduced amount of energy available for daily activities that can result from chronic illness. It can be a great way to understand the challenges of living with disability.

What I liked most is the idea that spoons are invisible, meaning people can look perfectly healthy and well but may not actually be healthy and well. Additionally, I’ve learned through experience that some people start the day with more “spoons” than others, and different tasks take different amounts and energy from different people. Personally, because of living with POTS, I have to devote a certain amount of energy every day to taking care of my health and making deposits in my energy “bank.” If I don’t, I know that when I try and make withdrawals out of my “bank” in the future, by expending mental or physical energy through effort, I’ll crash if I don’t have any energy stored. For me, trying to run on empty could not just affect my day, but even multiple days or an entire week.

I want to build off of the spoon theory today by talking about the “secret backpack” theory. The theory discusses not just disability but also diversity, while also bringing to light the advantages and superpowers one can develop from limitations, obstacles, and other perceived “negatives.” 

First off, I have to give credit where credit is due — my Uncle Jeff and fitness influencer Shaun T have been instrumental in helping me form this theory, and I’m directly communicating many of their ideas. I’m even copying the name of the “secret backpack” concept from Shaun T; I heard him talk about it on a podcast recently and it inspired me to write this post. I combine his ideas with some of my own, and I hope my perspective as a college student who has battled through chronic illness can bring a unique and refreshing viewpoint to the limitation conversation.

By now, you’re probably wondering, what is the concept of the “secret backpack”? What does it have to do with me? 

I believe everyone carries an invisible backpack through life. Each person on Earth has their own backpack, and everyone’s bag is filled with the weight of challenges, limitations, shame, fear, self-loathing, pressure, and all other sorts of baggage that comes from both internal and external sources. 

To personify this concept, we can start with a person with a disability. They might be carrying an extra 20 pounds relative to the average person. Their weight could be made up of the daily stressors caused by physical or mental limitations, or fear and self-loathing from social discrimination and harassment, or anxiety because they don’t fit into groups very well. Their weight could be a combination of all those things.

For someone who is an ethnic or sexual minority, they too are carrying some extra weight, because of the stress and trauma they constantly face through discrimination, microaggressions, and cognitive biases. Furthermore, you can add some weight to anyone’s pack if they grew up without a stable family structure. Same with anyone who has ever experienced financial hardship. Those are visible challenges, but invisible, internal, challenges can weigh one down too.

Even those who can be viewed as famous or privileged are carrying some sort of weight. Shame and guilt? The pressure of success? Anxiety? Loss of a loved one? That’s all extra luggage. People who struggle with mental illness, eating disorders, diabetes, or ADHD? Add weight. The point is, everyone has some kind of weight in their backpack. Some have more than others. And if you look at all of the weight I just mentioned, not too much of it is visible to the public eye. How often do we think of what others are going through before we judge? And how many of their challenges do we acknowledge on a daily basis? 

I don’t know about you, but I never used to look at people with an initial reaction of trying to understand the backpack they’re wearing. If they are clearly physically disabled, or the subject of visible discrimination, it’s pretty easy. But I never understood the struggle of a racial or sexual minority. I still can’t fully relate — I’m a straight white male. However, I can now empathize much more with those who do carry some heavy individual baggage, because of what I’ve been through and because of my new perspective on the world through the secret backpack lens. 

I used to dismiss and disparage the diversity programs at schools and corporations because I thought those programs gave unfair advantages to minorities solely because they were gay or black or transgender. I didn’t understand how the programs were leveling any playing field. Ironically, though, I failed to step back and grasp that I’ve used my story of struggles with disability to showcase my backpack. I’ve probably been a benefactor of open-mindedness and empathy because I know someone out there has acknowledged my limitations and weight and given me a special chance or opportunity because of what I’ve gone through. Realizing that completely changed my viewpoint. 

Sitting here today, I get it. I’m a fan of diversity programs. They acknowledge secret backpacks. Not only do they appreciate the weight that people secretly carry, but they also realize that secret backpacks don’t just carry dead weight. The heavier a bag is, the more tools and superpowers it contains. It’s not just about leveling the playing field for people who have visible or invisible struggles, rather, it’s more so about giving people the opportunity to use their tools and superpowers that they’ve developed through times of hardship. This allows for a platform for those with the heaviest bags to showcase their abilities of empathy, creativity, resilience, execution, and positivity. I’ll jump in more into the superpowers later on, but I first want to touch on how the weight actually affects people. Because it’s invisible, and it’s easy to dismiss. But stories and statistics can help to illuminate struggles and their significance.

I’ll start with the example of my life, which I touched on at the start of this piece. How does Postural Orthostatic Tachycardia, and its related disorders, affect me? 

My backpack is weighed down by physical weight, along with mental and psychological weight. First off, because of POTS, I have to pay strict attention to my sleep, exercise, and diet. Getting a consistent 8 hours of high-quality sleep is close to a non-negotiable for me. If I don’t get proper sleep, you can add some weight to my backpack. We can all relate to that; getting no sleep isn’t fun for anyone. However, because of my body and its makeup, I carry a little more weight than the average person if I miss out on sleep. Plus, I don’t recover as quickly and lose that weight out of my bag as fast as others. 

Don’t get me wrong, I can get through a day on low sleep. It’ll be a little tougher, but I can carry that bag. However, if I don’t take care of my sleep the next night, my bag doesn’t get any lighter overnight. It gets even heavier. Ditto for exercise and diet. If I don’t exercise, stretch, and do my mobility drills on a daily basis, my headaches and neck and back pain will flare up. That pain is not too bad to deal with from time to time. It’s a little extra weight. However, imagine combining that weight with the weight from bad sleep. If you add the weight put on by rapid inflammation or stomach distress resulting from poor dietary choices, I’m suddenly carrying a much heavier bag. Life becomes much harder.

A day with a headache isn’t that hard. A day with aching upper body pain, fatigue, and brain fog, along with nausea after every meal, is far more difficult. 

A different example for me, using the same analogy, can be shown through my mental energy capacity. When I take an exam at school, I believe my backpack fills up a little bit faster than others’ do. Once I’ve completed an exam, my bag is often so heavy – in the form of mental stress – that it’s difficult to do anything else during the day. Going back to the spoons analogy, a difficult exam can take all of my spoons away for the day. Same with a basketball game, for instance. I absolutely love playing basketball, and I often want to never stop playing once I get on the court. However, if I play for too long, I’ll pay the price. Whether it’s later that day or sometime in the next, I’ll realize my backpack got heavier, as I’ll start to experience an inflamed upper body and tightness and searing pains in my muscles.

I don’t want to play the victim here or make it look like I’m fighting an internal war every day when I wake up. I was just relaying some of my toughest challenges and how they relate to my bag. I know that in everyone’s backpack, there’s a lot of weight added after an exam. Some people, through learning disabilities or things such as ADHD or anxiety, can have a backpack that fills up much more rapidly than mine. Other might love to play basketball, but the weight of past injuries or illness might prevent them from ever stepping foot on the court again. I’ll reiterate it here — everyone has a secret backpack. Everyone’s backpack weighs them down in some areas of life.

I struggled to relate to the weight brought on by being a member of a typical “minority” group. However, I can see how being black, gay, or a woman, in modern society, could add weight into a backpack. The Harvard-based Implicit Association test highlights unconscious cognitive biases and shows, using numbers and statistics, that many white people, including myself, have a more favorable view of whites than blacks. In the past, after taking the test and revealing my bias to myself, I thought, “so what, I still treat black people and gay people and women with the same respect as everyone else.” And I stayed true to that. However, the new science of microaggressions shows that these cognitive biases can lead to slights that can add up over time. 

Before I dive into this, I want to say there are arguments both for and against microaggressions by scientists and thought leaders alike. With that being said, even if you disagree with the concept, bear with me, because I think something can be gained from a discussion of how race can relate to weight in our backpacks. 

According to the Journal of Qualitative Psychology,

“Microaggresions are subtle, mundane exchanges that communicate hostile, derogatory, or negative messages to individuals based on group membership. They can be verbal, behavioural, or environmental, and include staring, glaring, comments, actions, and gestures. These actions are not always conscious, yet are constant – often daily – experiences for people of colour, women, LGBTQ+ communities, people with disabilities, and members of other under-represented groups.”

A study from the scientific journal Cultural Diversity and Ethnic Minority Psychology showed that ethnic minority students experienced an average of 291 microaggressions over the span of 3 months. It also found a significant association between microaggressions and anxiety as well as microaggressions and binge drinking. 

Say what you want about that study, but there’s something to be gleaned from that information. My view is that taunts, insults, snide remarks, jokes, and other small, hurtful, actions add up over time. They are small, and inconsequential, and can often seem harmless. However, just think about every slight, or microaggression, as a pebble. One doesn’t do anything. But add 291 to a backpack, and that bag gets very heavy. Even when that number is much lower, stuff adds up over time. A comment about affirmative action toward a black person? A gay joke? Telling a woman they’re lucky they’re pretty, or else they wouldn’t have a job? Some things are aggressions, some are microaggressions, and some are straight up insults.

Imagine the weight that can build up and bear down on someone just because they are different. There may not ever come a moment where you see direct discrimination or hate directed towards a person, but the invisible accumulation of small things can make someone’s life that much harder. I don’t want to speak too much on sexism or racism because I haven’t really experienced it. But I think discrimination and microaggressions are significant forms of weight for a backpack, and the secret buildup of that weight can lead to a very heavy secret backpack.

As I mentioned before, I think there are examples of weight in everyone’s life and in all places. I know there are people who may have made a decision as a child that they still regret and have never come to terms with. I view that as weight in a backpack, and that weight is probably there for life without some degree of acceptance or acknowledgment to help remove it. People that have a tendency towards anxiety also have thousands of tiny pebbles that add up over time, and, when you add a rock from an exam or breakup or another stressful life event to the backpack, they can absolutely crumble under the heavy weight. To others, it can look like someone is perfectly fine, whereas the weight of their backpack could be growing too heavy for them to carry, starting to overflow with rocks and pebbles of the present and past.

If you think about carrying a backpack every day, carrying a heavier one would be undesirable and would lead to more daily stress. Over time, though, there’s also something positive about carrying weight. It helps you build strength, and carrying the same amount of weight every day gets easier over time.

I believe, using the same analogy, we get better at carrying our secret backpacks over time. At first, a weight can be very heavy and difficult to carry, and new, added, baggage in the form of trauma or challenges just makes life harder. But, carrying that same amount of weight gets a bit easier the next day. Even if weight is added over time, we as humans are adept at adjusting and adapting. Whether we are healing mental or physical scars or distancing ourselves from a negative event, we are often able to come to terms with the heaviest weight in our lives, over time.  

The process of pain and struggle is how we rise up and conquer limitations, and it’s also through struggles where we can build some of our biggest strengths. That’s the second component of the secret backpack, and one that may be even more important than the first.

Those weighed down most by weight in their packs grow stronger over time, and living life despite their weight helps them to develop superpowers that no one else has. Every action has an equal and opposite reaction, and I believe every hidden weight develops an equal and opposite superpower in people. 

I’ll start with what I believe are my hidden superpowers. First off, I think I’ve developed the perspective to write this post through the empathy I have developed on my journey. Before I was diagnosed with POTS, I had it all in life; it was easy to relate to those around me who excelled in school, sports, and in their social life. However, when I had all three of those things taken away from me in a single year of high school, I suddenly couldn’t relate as much to the all-stars and overachievers. I initially thought that was a bad thing; it’s easy to look at society and see the top achievers as the most special and important people out there. When I looked around, though, I realized that there were other people who had hidden struggles. The girl who took a test in a different room was no longer weird or different for doing that; she was now a friend because she was the only other one in the class who walked to the Testing Room with me. That kid who sat out of gym class often, because he “hurt his back?” He sure did look fine. But I looked fine too, and I could relate to him because I was experiencing firsthand that not all injuries are visible cuts and bruises. 

I was starting to see everyone else’s backpack. Actually, to be fair, I swung to the other end of the empathy pendulum, and I identified much more with the invisible than the visible, popular, superstars. I started to look down upon the people who had it all. I was a bit jealous — they had what I used to have, and now I had to struggle, while they lived an easy, ideal, life, focusing on what I viewed as surface-level achievements in school and sports. 

My superpower started out small, but my empathy has increased over time. Remember the equal and opposite reaction principle? I realized that with fame comes pressure, with power comes responsibility, and with achievement comes unrealistic expectations. Now I was really starting to see the backpacks of others. Not only could I see the hidden “negative” struggles of others a little better, but I also realized that everything society views as “positive” comes with a cost, and that cost equals weight in a backpack. Did I still think it was unfair that my backpack was heavier than the bags of others? Yes, but I also realized my backpack was a far lighter load than so many others’ in the world. The empathy that allowed me to view and relate to people’s challenges helped my perspective to dramatically shift.

I was always focused on what mattered in my community growing up, which meant achievement in academics and athletics. I don’t believe the societal championing of achievement is wrong, but I also realized some people are limited by their body or their past in what they can achieve. I’m a proponent of big ideas, big dreams, and the concept of “you can do anything you put your mind to,” but, when I was suffering the most through POTS, I couldn’t do everything. Literally, if I tried to push my body too far out of my comfort zone, it would push back. I would have a miserable few days that could include vomiting and fainting and headaches and brain fog, and I would have to live far below my comfort zone for a number of days just to get my body back to normal. That thought was completely new to me. 

I’m still very driven by achievement, but it’s definitely not the value I champion today. To me, progress is more important. Progress is something we can all do. Everyone can be a little bit better than they were yesterday. Progress can mean taking one more step on the treadmill or lasting a little longer through a class without a headache. For Amazon, progress could mean a billion more dollars in revenue It’s all relative. We’re only competing against ourselves. My superpower of empathy bred the development of my superpower of perspective, and both of those are fundamental principles in my life today.

Diversity, especially for organizations, is clearly a superpower — this article cites studies done by McKinsey & Company that show that gender and ethnic diversity in companies are clearly correlated with profitability. Why is this the case? There’s definitely the valid argument that diversity of people leads to diversity of thought, and diversity of thought helps to challenge long-standing beliefs while bringing new ideas to the table. I agree with that theory. I also surmise there is something else working behind the scenes for diverse companies. It’s the superpowers of diverse people themselves! 

I talked earlier about how sexual and ethnic minorities have heavier bags than others, due to cognitive biases, implicit associations, and direct and indirect discrimination. I also talked about how more weight leads to more strength. If someone has been faced taunts and slights and discrimination all their life, they might have developed an incredible fortitude. They don’t care what people say or think, and it allows them to act with complete self-awareness and leverage their strengths more than others, so that they can give their absolute best contribution to their work and relationships. A man who has been in a wheelchair all his life may have to work much harder than others to plan his day because “normal” activities are more difficult for him than average. In turn, this planning has helped him to develop incredible organizational and management superpowers, so he may be able to oversee multiple large teams in a corporation and keep them all on track without any problems. These are all hypotheticals, but you can see where I’m going. People who are blind or deaf compensate by developing extraordinarily strong senses in a different part of their body. Similarly, when people get weighed down in one area of life, they compensate by growing stronger in another.

I mentioned my personal empathy as a superpower earlier, but I bet I pale in comparison to so many others. That’s a superpower that almost anyone who has gone through a struggle can pull from. The more challenges you’ve gone through, the more you can relate to others who have faced obstacles. And all of us, from the newborn child to the Fortune 500 CEO, want and need people to relate to us and help us through our problems. There’s a reason Forbes talks about sensitivity and empathy as a superpower. With the world becoming so interconnected, the ability to relate to others on a human level is becoming increasingly important. The heavier one’s secret backpack is, the more they can relate to the hidden weight of others.

Think about it: what coping strategies have you used to work through your toughest trials, and how have those strategies helped you to develop superpowers today? A different strength of mine I didn’t mention earlier, that comes directly from my battle with POTS, is my desire to improve and progress in my life. When I was out of school, sports, and without a social life, I had to find a way to get past those issues and take back control of my life. Since then, I’ve harnessed the Cognitive Behavioral Therapy-related powers of the brain to find new habits and strategies by which I can live my life, and then I have implemented them into a sustainable structure. I can’t tell you how much my morning meditation, cold showers, exercise, healthy eating, and high-quality sleep have changed my life. I wouldn’t be the person I am today without any of those habits. I can tell you, though, that they’ve been built up over time, and I’ve taken the initiative to build each of them from scratch, modeling myself after world-class performers in different areas of my life to set my body up to support my brain and its work. I don’t think the desire to constantly innovate and improve in my life will ever go away. It would’ve never materialized, however, had I not hit rock bottom, with no choice but to make progress in my life. When I was content with my life before POTS, I saw no need to innovate or improve. I’m now thankful for all of the weight POTS added to my backpack, because now I have a superpower I pull from my bag on a daily basis.

My only ask to readers of this post is that they recognize secret backpacks; both the bags that one carries personally and the bags of others. I truly believe one’s greatest strengths come from his most strenuous challenges, and recognizing and accepting pain is often the first step in lightening one’s load and building up a superpower. In addition, when we accept our own weight, it helps us to relate to and acknowledge the weight of others. Privilege is the ability to live without a certain weight that others may have. Privilege for me, as a straight white male, is the benefit of never having to worry about being discriminated against. If I get a promotion, I’ll never hear it’s just because I’m pretty (even though I am!) or because I’m filling a quota. If I get pulled over by a cop, there’s no worry about unfair violence against me. I’m privileged because I’ve never had to worry about if there will be food on the table for dinner.

I can go to the gym on a daily basis and work my body out almost to its max, without too many repercussions afterward. That’s a privilege that’s very real to me right now, because it’s one that I didn’t have two years ago. Two years ago, other people had the privilege of living on a daily basis without having to worry about their salt intake, standing up too fast and getting dizzy, or getting a splitting migraine ten minutes after starting a test. We all have different challenges and privileges.

I don’t think people should be shamed for being straight or white or rich. I just think people who have the privilege of not having certain weights in their secret backpack should acknowledge others who do. If someone gets accommodations in school or says they can’t go out to eat with everyone, take a step back and think for a second. Maybe they have a secret backpack with an intense learning disability or a myriad of money issues hidden inside. The worst thing you can do is ignore the backpack altogether and dismiss someone for being different, thinking that you’re better than them.

We all have different backpacks, and we all have different ways in which we are privileged. We also all have different superpowers that we’ve developed because we’ve lacked certain privileges and advantages, and we’ve had no choice but to push our way through certain weights in our bags. Let’s remember that and show love and acceptance to everyone.

Much like the powers present in diverse organizations,  when society as a whole recognizes the secret backpacks worn by its members, society, in turn, develops superpowers. First, we recognize the weight held by our peers, and love and acknowledgment will lead to personal acceptance and peace. Then, once we can become self and societally-aware, we can start to bring out the absolute best in people. A world of superheroes with superpowers will lead to superhuman efforts, advancements, and developments. How does that sound for a change?

Thanks for reading! I appreciate every little bit of feedback and support, so please reach out to me if you have any comments, questions or thoughts! 

5 Things I Learned at Mayo Clinic

Disclaimer: These posts are speaking from my personal experience and I’m trying to outline what has worked for me. I know everyone’s cases are different, so I want to respect that, and say up front that I know my methods my not work for others. By no means am I looking to push my experience as the only way that can work for people, nor am I trying to say that anyone is wrong or weak for not pushing through! I have tremendous respect for everyone fighting through POTS, and I am only looking to inject some more strength, resilience, knowledge, and positivity into an already incredible community. I’m also just looking to share my story and connect with others. So, thank you for reading today, and know that you are amazing, and I wish you the best on your personal journey!

In the summer of 2017, a year after being diagnosed with POTS, I was fortunate enough to attend the 2-day Pediatric Pain Rehabilitation Program at Mayo Clinic. My brother and sister had already attended the 30-day program, so I knew about Mayo’s principles and approach going into my visit. Even still, those 2 days were life-changing, and I use the lessons I learned two years ago on a daily basis today. Mayo attacks POTS with a non-pharmacological approach and opts to use the power of the mind and body over the power of drugs. It’s worked wonders for me.

Here are five of the most transformative things I learned at Mayo and some practical tips on how you can apply them to your own life.

Fake it Til You Make it

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After a year of POTS controlling my body and mind, I realized I needed to live my life, chase my goals, and be myself, no matter what I was going through. Mayo gave me a science-backed approach to living well despite symptoms: “Fake it til you make it.” This means setting goals and sticking to them. It means committing to events and attending. Holding yourself accountable. It means ignoring your pain and telling yourself that you are healthy and happy, no matter how you feel. And when you keep doing this, for an extended period of time, something incredible happens. The self-fulfilling prophecy begins to work. There is science behind it — when you convince yourself that you are pain-free, your brain literally forms new neural pathways that tell your body you are not in pain anymore. 

If you get your family and friends to support you and stop asking how you are feeling, you can start going through an entire day just living life. Not thinking about POTS. This is not a magical approach, and it won’t make your POTS disappear. But all of the medication and exercise and nutrition in the world will not make a true impact on your life if your mindset is still one of being a “sick person.” If you can start with the right mindset and focus solely on where you want to be and how you’re going to get there, your mind will help you get there. The mind will do all it can. It worked for me. 

Once you establish the right mindset, everything else can fall in to place. You can add in a schedule and exercise and meditation and proper nutrition and socialization and whatever else you want to, and you start getting better day by day. Learning this was tough. At Mayo, they fully acknowledged that people with POTS are in intense pain. However, they said we need to forget that. In the program, we had to attend the social events and be on time for our group sessions, physical training, and anything else we had scheduled. If we didn’t show up, we were kicked out. That’s how important it was in the program’s eyes. The amazing thing: there was almost no one who dropped out, and all of these kids who came in with so many limitations were living without limits by the time they left.

If you can let go of your limits, your mind and body will find a way to do what they need to do to get you to where you need to be.

Set and Stick to a Schedule

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Learning about faking it til I made it was great, but I wondered what I was supposed to do all day when my current daily schedule was based on reacting to how I felt. Mayo’s answer to that dilemma was to set a schedule and stick to it.

How can one do that? Goal setting comes first. Some of my goals were to be back in school full time, exercise 6 days a week, meditate daily, and socialize on weekends. Those might seem ambitious, but my strategy was to go all in on life and take extreme ownership of my reality. It’s not like I was doing anything my body was too unfamiliar with anyway — attending school, exercising, and socializing were all things I had done for most of my life. The way I looked at it, I was going to get back to being a normal person again, with the additions of a meditation practice and a strict exercise routine. 

So, I set a schedule. I went to bed at the same time every night and woke up at the same time every morning. I would go to school, put on a smile, and focus on seeing my friends and getting my work done. After school, I grabbed a snack and went right to the gym, six days a week. It became easy for me — I didn’t even have time to think about my pain or my problems because I was too busy following the plan on my schedule. I was able to “automate” the first 10 or so hours of my day, which led to me focusing on getting one thing done at a time. Then I would move on to what was next up.

I made plans to hang out with people well in advance, so when the time came, I always left the house and went out no matter how I was feeling. My family held me accountable too. I went to church, watched my siblings play in their sporting events, and attended family gatherings. I made my focus external, on my goals, instead of internal, on my problems. By setting my schedule ahead of time and always sticking to it, I ensured myself that I would live out my goals no matter what, and my life became easier and easier over time.

Keep a Healthy Balance

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Now, you might be thinking, no matter what you tell your brain, it’s really difficult to live your life normally if you are fainting or vomiting while you are trying to stick to your schedule. You might be saying, “that’s what happens to me, and so there’s no way I can do everything he’s talking about.”  I understand that feeling, and I know applying these principles may seem monumental or insurmountable.

I know people who came into Mayo’s program fainting and vomiting dozens of times per day. However, I know those same people were able to live unaffected by their symptoms in just days after starting the program.

It seems crazy, but here’s how they did it: they applied a fake it til you make it attitude, and pushed themselves to follow a schedule, while always being mindful of not pushing their body too far.

The key here is keeping a healthy balance. Personally, I knew that pushing my body too far physically could trigger a crash or an intense bout of symptoms. Spending too much time on academic work or in an intense social setting could do that too. When talking about “too far”, I’m not talking about being uncomfortable. As Mayo said, you have to push yourself outside your comfort zone to make a change. But pushing yourself too far is not a good plan either. You have to find that balance.

My way of doing that was through planning breaks ahead of time around long or strenuous events in my schedule. For example, in school, I would periodically leave class to take a walk through the hallway and I would sit down to clear my mind. Going further, if my friends wanted to play one more sports game or wanted me to stay out an hour longer, I often had to say no to ensure I kept my body in a healthy balance.

Over time, I looked at balance as a principle for not only limiting my time in activities but also to hold me accountable so that I was spending enough time doing them. Balance was a foundational belief that kept me exercising, socializing, and working through problems. Too little and too much were both bad for my overall wellness — I realized it is best to use moderation and balance for everything in life, and making sure I do what I want and love without overextending myself has been a key to thriving with POTS.

Sleep is the Foundation of a Healthy Life

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Sleep can be both a major issue and a major refuge for people with POTS. So many POTSies are tired, and this can is often due to poor sleep hygiene; either too little or too much. At Mayo, we learned sleep is the foundation of our health. If we don’t get sleep right, they said, it doesn’t matter what else we do — there won’t be much positive change in our health and well-being.

It’s like trying to build a house. It doesn’t matter how hard you work or what materials you have — if you don’t have a proper foundation, you can’t build a house. Or, you’ll be can build a house, but it will probably fall apart rather quickly.

To build the best night’s sleep, you can start with going to bed and waking up at the same time, every day. It’s that simple. If you have trouble falling asleep, you should still turn your lights out at the same time every night. Over time, your body’s circadian rhythm will adapt to this new sleep schedule and you’ll have an easier time falling asleep. Better yet, you’ll start to feel refreshed and ready to attack the day after waking up.

Again, Mayo’s recommendation was to sleep at the same time, every day. We were strictly forbidden from sleepovers for six months after the program. I was completely against this at first but was later grateful because I realized how I never lost control of my sleep schedule.

At times, it meant leaving social events early or going to bed when I didn’t want to. Sometimes it meant waking up with an alarm on a day when I really wanted to sleep in. But a consistent sleep schedule helps to set a consistent overall schedule, and waking up and going right into a morning routine on a daily basis transformed the way I attacked my days — with more energy, positivity, and discipline.

For anyone who has difficulty sleeping, there is a wealth of information online about how to get better sleep. For starters, Mayo forbade devices in the bedroom and said no to naps. I am in favor of cutting out naps because I believe one shouldn’t have time for naps if they’re following a schedule, and naps are often something someone does when they feel tired or don’t have anything to do.

Tell your body who the boss is and keep it on a strict schedule. Work yourself hard during the day and you’ll sleep well at night. Apart from those tips, keeping your room dark, getting more sunlight during the day, exercising in the morning, and cutting out caffeine can all make big differences in the quality of your sleep. If you want to read from what’s currently considered the Bible of improving sleep quality, the book Sleep Smarter is the best out there right now.

Mayo preached the power of sleep at the program, and my personal experience and research have only led me to confirm my belief. Sleep is the most important thing for your health and it is the foundational piece for building a healthier mind, body, and spirit.

Socialization is Key for Thriving with POTS

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Mayo emphasized the importance of socialization for living a healthy and happy life. Everything we did on a daily basis was done in groups. It was inspiring for me to meet other people my age who were going through the same things I was, and we all held each other accountable and pushed through our pain together. We didn’t talk about our pain at all, or how we were struggling, and it was refreshing. It was normal. It was joyful.

Just like exercise or sleep, Mayo highlighted the importance of scheduling in socialization ahead of time and then sticking to your plan. While getting out can seem like too much effort at times, it is often one of the best ways to distract you from your pain. Making an effort to spend time with people you love can be one of the best investments you can make.

Get out and do it. If there’s one takeaway you get from this article, I hope it’s that it is possible and also important to do the things you love with the people you love. Do the best you can to take a little more control of your body every day. Eventually, with the right mindset, schedule, balance, and habits, you’ll look back and be amazed at how far you’ve come.

Let me know in the comments: what principles have you learned or picked up that have improved your quality of life? I would love to hear about what’s helped you, as would everyone else reading this post!

Thank you as always for reading and, if you want to be a superhero, please be sure to spread this post and the word of POTS positivity with your family, friends, and social media. I appreciate the feedback and support immensely, and you never know who you can help when you share a story! You can also reach out to me through the “Contact” section at the top — I am always looking to answer questions or provide support in any way I can. Thank you again for reading.

Let’s keep making POTS a positive!

How Meditation Can Transform Your Life and Your Relationship to Pain

Disclaimer: These posts are speaking from my personal experience and I’m trying to outline what has worked for me. I know everyone’s cases are different, so I want to respect that, and say up front that I know my methods my not work for others. By no means am I looking to push my experience as the only way that can work for people, nor am I trying to say that anyone is wrong or weak for not pushing through! I have tremendous respect for everyone fighting through POTS, and I am only looking to inject some more strength, resilience, knowledge, and positivity into an already incredible community. I’m also just looking to share my story and connect with others. So, thank you for reading today, and know that you are amazing, and I wish you the best on your personal journey!

When I visited the Mayo Clinic’s Pain Rehabilitation Center (PRC) about two years ago, I was looking for something practical to help me live my life fully with POTS. Medicine, compression socks, and salt could only go so far for me — I wanted something that could fundamentally change the way I was living in a positive way, without any negative side effects. The Mayo Clinic offered countless strategies, on physical, mental, and emotional levels, to help me deal with pain. I’ll be sharing everything I learned at Mayo, and what I’ve learned outside of it, through this blog. But first, I want to talk about my most powerful daily practice, something that changes me on a physical, mental, and emotional level. It is something I learned at Mayo, and something I have practiced every day since my completion of their PRC program. What is it? Meditation! Meditation has decreased my stress and anxiety levels, improved my concentration, helped my heart to stabilize its activity, assisted with my digestive problems, and helped my body in countless other ways. Most importantly, though, meditation has dramatically changed my worldview and the acceptance and appreciation I have for my circumstances.

Meditation, and specifically a practice with a focus on diaphragmatic breathing, is the most important thing I do to deal with stress, pain, and life. For the last two years, I have practiced meditation every morning for about ten minutes, and I notice a substantial difference in my overall disposition and ability to deal with stress from my practice. If I ever miss a day, I am much more likely to overthink things and stress myself out, leading to silly arguments and a bad mood. Meditation not only has incredible benefits for anyone who practices, but there are a number of benefits that can help directly with POTS symptoms. I’ll be diving into some of the fascinating research into how meditation can help the body with POTS and then I’ll share my meditation story and offer some practical ways to implement meditation into your daily life!

As most of you probably know, with POTS, there is a major dysfunction with the autonomic, or involuntary, nervous system (ANS). Within the ANS, there are two divisions: the parasympathetic and the sympathetic nervous system. The parasympathetic nervous system (PNS) is known as the “rest and digest” system and it stimulates digestion, activates various metabolic processes and helps us to relax. The sympathetic nervous system (SNS), on the other hand, is known as the “fight or flight” system and it makes your heart beat faster and stronger, opens up your airways so you can breathe more easily, and inhibits digestion.

People with POTS tend to have a high-activity sympathetic nervous system and a low-activity parasympathetic nervous system. This is why, as shown by this study,  a dominant SNS can result in heart rates getting out of control, major digestion problems, and a constant, reactionary, body state of fight-or-flight. However, diaphragmatic breathing can help to level out the systems and establish a better autonomic balance. An article published in the Journal of Psychosomatic Research shows a breathing practice can reduce sympathetic nervous system activity and increase parasympathetic nervous system activity.

Additionally, studies have linked dysfunction of the autonomic nervous system with anxiety, and we all know anxiety and stress can make our POTS symptoms worse. However, here’s some good news: a breathing practice can help to calm anxiety and stress. According to a review published in the Frontiers in Psychology Journal,

“Physiological evidence has indicated that even a single breathing practice significantly reduces blood pressure, increases heart rate variability (HRV) and oxygenation, enhances pulmonary function, and improves cardiorespiratory fitness and respiratory muscle strength.”

For POTSies who struggle with heart function,  blood flow to certain parts of the body, and physical fitness levels, diaphragmatic breathing is an essential tool in overall health and well being. Sounds awesome, right?

Diaphragmatic breathing is an essential tool for living to the fullest with POTS. I even use it to help me lift more weight when strength training, and taking big, deep, breaths will always promote positive change in your body, whether you immediately feel it or not.  The best part is, practicing diaphragmatic breathing is not at all difficult, and you can train your body to change your breathing pattern to one that mimics diaphragmatic breathing more over time.

To practice diaphragmatic breathing, you can lie down on the ground, put your hand on your stomach, and breathe in through your nose, focusing on pushing your stomach out. Then, let your stomach muscles fall inward as you breathe out through pursed lips. I’ll let the Cleveland Clinic explain it to you in better detail here. If that doesn’t work for you, a Google or YouTube search is another great way to learn how to train your breath.

Though you can perform a breathing practice on its own, or with yoga or exercise, I recommend integrating diaphragmatic breathing into a meditation practice. Meditation was a key focus at Mayo Clinic — they had us meditate during the day and we were told to use a diaphragmatic breathing practice at night before bed. They recommended a twenty minute session daily, but, as mentioned earlier, I find ten minutes in the morning does the best for me. The key is to find what works for you. In meditation, there is no wrong or right way to do it. The focus is about being present and allowing time for your mind to be on its own, without a specific focus or judgment on present emotions or happenings.

Meditation has its own treasure chest of health benefits to speak about. A Forbes article titled, “7 Ways Meditation can Actively Change the Brain” states that meditation can be as effective as antidepressants for treating depression and anxiety, can lead to size changes in areas of the brain that affect mood and well-being, and can improve concentration and attention span — after only a few days of training!

Meditation can also help to change perspective. I know I can take time every day to let my thoughts go and calm my body down, no matter where I am or what is going on. It is extremely reassuring to know that I am working on my brain and my overall health on a daily basis by meditating, and nothing can stress me out too much because I find serenity and solace in my practice.

For my personal meditation practice, there are three main resources I use. I like to be guided, and the Headspace app has been invaluable to me in helping me through my mornings. Headspace gives users a ten-day intro pack for free. Using those ten days alone, on repeat, is more than enough as a guide — I used the ten-day pack for about three months after starting. If you buy the yearly “pro” pack (about $60), you gain access to ten to thirty-day packs on topics such as getting to sleep, dealing with pain, and increasing happiness. There are options for ten, fifteen, and twenty-minute sessions, and there are “mini-packs” that are one, two, and three minutes that can help during a panic attack or a high-stress time. Another neat feature is that you can track your meditation stats through Headspace. For example, my Headspace stats show I have meditated for over 46 hours, with 285 sessions and an average duration of 10 minutes. How cool is that?

Soundcloud, the music streaming platform, is another free way to access guided meditations. Big names in meditation such as Tara Brach, Sam Harris, and Dr. Alejandro Junger all have guided meditations on Soundcloud that I use often. Additionally, tarere is all kinds of meditation music on Soundcloud that can be used as a background for a diaphragmatic breathing practice. Whether you like a calming nature sound, or prefer something more techno that can stimulate brain waves, you’ll be sure to find whatever suits your needs on Soundcloud. I recommend trying out some different background structures (music, guiding, a combination) and seeing what works best for you!

The other way I have found guided meditations is something we all use on a daily basis – Google! Just a simple Google search of “meditation for stress” or “breathing to calm down” can yield hundreds of thousands of results. Often, YouTube videos with a high number of views or websites of people who have some kind of credential are the best options to start. Calm.com is also something I’ve seen that is similar to Headspace and has free resources to help people start their practice. Give it a shot — the resources for meditation are literally endless.

It is also important to mention guided meditation is not the only way to go. Vipassana meditation and Transcendental meditation (TM) are extremely popular around the world and they use different techniques than the guided method. Both methods are taught through courses and retreats, so you can connect with other beginners to find a community for your meditation practice. Transcendental meditation has quite the community; it has been found to have evidence-based health benefits, and famous people such as Oprah Winfrey, Ellen Degeneres, Ray Dalio, Tom Hanks, and Jerry Seinfeld all practice TM and have said it’s an essential part of their lives. Furthermore, if neither of those sounds good to you, there are dozens of other ways to practice meditation from around the world, so you may fall in love with a practice that I haven’t even heard of! Again, finding what works for you is most important.

Meditation is an integral part of my day, and I have recently started to practice under the sun, outside, to get some morning sunlight and reset my circadian rhythm. The ten minutes I spend before eating or looking at my phone is the perfect way to start my day right and make sure my mind is primed to attack the day without letting stressors get in the way. In addition to meditation, I also take daily cold showers, have another breathing practice for my VO2 max capacity, and do a set of morning mobility exercises to warm up my body and work towards injury prevention. If anyone is interested, I’ll have a post about my full morning routine coming soon (it’s here).

I urge you to consider adding meditation or a breathing practice of some form into your life — the benefits are abundant! It can be a lifesaver for dealing with POTS, but the practical benefits for anyone means starting a practice is a no-brainer. As the narrator on Headspace, Andy Puddicombe, says, you should “treat” your mind daily — it’s the most important muscle in your body!

Thank you so much for your reading and support! Please let me know in the comments section what you think of this post, if you have any questions, and if there is anything you would like me to talk about in the future. I would also love to hear from you personally in the “Contact Me” section above. Thank you again and please share this post so we can help to build a community of positivity around POTS!

Barely Surviving to Fully Thriving

My journey with POTS

Disclaimer: These posts are speaking from my personal experience and I’m trying to outline what has worked for me. I know everyone’s cases are different, so I want to respect that, and say up front that I know my methods my not work for others. By no means am I looking to push my experience as the only way that can work for people, nor am I trying to say that anyone is wrong or weak for not pushing through! I have tremendous respect for everyone fighting through POTS, and I am only looking to inject some more strength, resilience, knowledge, and positivity into an already incredible community. I’m also just looking to share my story and connect with others. So, thank you for reading today, and know that you are amazing, and I wish you the best on your personal journey!

Hi, I’m Tommy. I’m a rising sophomore at the University of Michigan living with Postural Orthostatic Tachycardia Syndrome. I have experienced many of the ups and downs of those that have been diagnosed with POTS, but today I am living a healthy, happy life. I can look back and say that I am genuinely thankful for my POTS diagnosis and know I have been shaped for the better because of it. I want to help people power through POTS, and realize that everyone is a powerful individual no matter what they are going through!

I was diagnosed with Postural Orthostatic Tachycardia Syndrome following a concussion the summer before my junior year of high school. At first, I ignored the diagnosis. I was a high-performing student on the top academic track at my high school, and I was involved with AP classes and varsity basketball while maintaining the role of Vice President of my class. 

Just as many other 11th graders are, I was way too busy for a high schooler. Especially one with POTS. Between staying up late studying, daily workouts and training, and hours per week towards building our homecoming float, I was gradually wearing my body down, not putting thought towards taking care of myself. This built up all the way to mid-October, leading to homecoming weekend, a weekend of festivities and fun. However, on the night of the homecoming dance, instead of being out having fun with my friends at the dance, I crashed. I never left my house, and instead, I was fainting and throwing up because I had ignored my POTS diagnosis and failed to take care of myself. I had pushed my body too far, and it started to push back. 

The rest of my junior year was a blur. I spent most days in bed, watching TV, or playing video games, with brain fog, intense shoulder, back, and neck pain, and lightheadedness whenever I stood up. I never really left my house, lost my relationships with most of my close friends, and fell into a deep depression. At weekly hospital visits, I was tested for everything from brain lesions to mini seizures to whether or not I had complete motor control in my legs because of a limp in my walk. I worried that I would no longer be able to achieve the goals I once dreamed of, and I wondered if I would ever feel “good” again — I just wanted a day without pain, dizziness, or fatigue.

It’s scary, the fear that you might be losing yourself. Losing your entire identity. I had given up on life in a way because I really did not see any hope. How could I live my life if my body wouldn’t let me? One night, however, I was reading a book about investment banking. Banking is something I was interested in as a future career path, and the thought popped into my head that if I wanted to achieve my lifelong dreams, I had to start going to school. If I wanted to get into college, I had to show universities that I was making positive change. I probably did not need to be an all-AP straight A student, but just showing that I was making progress in my life and academics is all colleges need to see. I made a concrete decision that night to be the best I could be. If I wanted to change my life, I needed to put in my absolute best effort every day.

To be the best version of myself, I saw no other option but to try and live as normal a life as I could. I was in school 2-3 days a week for a few hours at a time. I was lucky to have incredible support from my parents, my guidance department, and my teachers. Though I had to drop out of my morning class in my first semester, I was able to finish the 3 classes I had signed up for in second semester (a normal student at my high school takes 4 classes). I was also in the fortunate situation of having seen my twin sister and younger brother go through a POTS diagnosis of their own. They both went to the Pediatric Pain Rehabilitation Program at the Mayo Clinic in Rochester, MN, and I watched them return home with a “mind over matter” attitude and learned that there was no cure for POTS, only a way to live with it. I absorbed some of the strategies that helped them, such as following the Levine protocol on an exercise bike, taking daily salt and Florinef, and using the cognitive behavioral therapy principle of  “faking it til I made it.” These changes allowed me to live my life, although I was still relatively unwell and uninspired. 

After seeing the positive benefits Mayo brought to my siblings, and because I knew most of the principles of the Pain Rehabilitation Program, my parents and I made the decision to attend the 2-day Pain Rehab Program for teens the August before my junior year. My goal was to gain a “toolbox” to deal with my chronic pain and to meet other people my age with POTS. 

The Mayo Clinic was incredible. I learned cognitive behavioral therapy, strategies to help me get through bad days, and, most importantly, that there is no cure to POTS, meaning I had to live my life no matter what I was going through. I was able to talk with others who were also going through their trials with chronic pain, and we held each other accountable as we stopped our pain behaviors, attended activities together, and maintained an overall positive attitude. After Mayo, I was no longer allowed to talk about my pain. My parents couldn’t mention it either. The fascinating science behind ignoring pain lied in the concepts of neuroplasticity. By focusing on my life, I was literally rewiring my brain to ignore my “pain pathways” and establish a more productive thought stream. Chronic pain sometimes means that the actual physical cause for pain has gone away, but one’s brain can get so deeply wired that every time they have a certain thought or behave a certain way they will feel pain, no matter what the body’s physical health is like. 

I started following a consistent sleep schedule, established a morning meditation routine, and constructed an exercise plan. I started to make more plans with friends. No matter how I was feeling, I followed my schedule and kept my commitments to myself and others. I started to take control of my pain after my pain had had control of me.

It’s funny how your pain disappears once you stop feeding it. And every time it would pop back up, I would practice what I learned through cognitive behavioral therapy and my newfound meditation habit and just focus my thoughts, clear my mind, and turn my attention to what was next on my schedule. I was lucky enough to start school right after I returned home from Mayo. I still did not have a first period, but I attended every one of my other classes and did not miss a day of school in the first semester of my senior year. This was an incredible time for me. I went from chronically absent and being known as a “sick kid” to showing up every day with a smile on my face. I built up the endurance to work out six days a week, got back to being involved in my vice president role for our homecoming celebration, and played intramural basketball, leading my team to an undefeated championship season.

Despite all of those great elements of my comeback, I was still “behind” my previous self in almost every way. I couldn’t take the AP classes I wanted, couldn’t play on the varsity basketball team I had dreamed of and wasn’t able to devote as much time to my class and homecoming as I would’ve liked. Additionally, though I did not acknowledge my pain, it still showed up every day, and my body was not exactly doing me favors. At this point, I could have complained that I still had issues, that my life was harder than most kids around me. But I chose to look differently — I was doing far better than I was before, and every day was part of my constant and never-ending improvement. I kept building up positive brain changes, sticking to my guns and following my plan. My positive momentum continued all the way up until the end of high school. As vice president, I gave the opening speech at my high school graduation, and it was surreal. In just under a year, I had gone from scared of standing for too long in fear of dizziness and pain to standing confidently, representing my high school class, welcoming thousands of people to our graduation.

When applying to college, I looked to use my story as a way to set myself apart. I truly believe that the resilience I displayed and the perspective that I gained from my trials with POTS was an advantage in my life. My Common App personal statement was all about my resilience and positive change that I had gained since my diagnosis. My story helped me gain admission to the #1 Public University in the country, the University of Michigan, and the #3 Business School in the country, the Ross School of Business. 

I knew absolutely no one going to Michigan, but the challenge of making friends paled in comparison to the challenges I had faced in the past couple years. I realized I was fortunate because, with my perspective, what seemed like major problems to others were just minor issues to me. At Michigan, I tried out for and made the top club rowing team in the country, and joined a consulting club with a 2.5% acceptance rate. What was my strategy?

“Go in, knowing you can do anything you put your mind to, and knowing that any setback will end up benefitting you later on in some way.”

Trying out for clubs and organizations was literally a win-win for me: if I got in, I was suddenly a part of an awesome team like Men’s Rowing, and if I didn’t, I knew the organization probably wouldn’t have been a good fit for me and I had the opportunity to try so many other new things out! 

College has reinforced my belief in myself and raised my self-worth. Going from not being able to play sports in high school to competing at a collegiate level in a demanding sport such as rowing showed me I can do anything. Achieving a 3.9 GPA first semester at a top-ranked school after struggling to stay in class in high school showed me I can do anything. And living a life where I am in complete control, where I can say I am truly happy, has shown me I can do anything. 

As I said earlier, my journey is still far from over, and I am learning and growing every day. I have been fighting neck and back pain for the last three years and think I found an answer with a recent diagnosis of thoracic outlet syndrome. Some days, my pain will flare up, and I’ll lay on my bed and question whether I can accomplish what I want to with the unpredictability of my body. But then, I always remember: It’s not about the cards you’re dealt in life, it’s about how you play the hand. I know I have to still exercise, socialize, and live my life no matter what my body feels like. 

One could say today I am symptom-free from POTS, but I look at it as a daily practice of living my life no matter how I feel. Looking back, I am thankful for my pain and my suffering. I am now a thriving individual who takes care of their body before everything else, and I am passionate about health, fitness, and self-improvement. I love to learn about new ways to optimize my physical and mental health and performance and share those with others. Sometimes I think, how would I ever have discovered the powers of neuroplasticity or positive self-talk without POTS? 

My goal is to now use my story to educate, help, and inspire others, and build a platform to show stories of those who have powered through POTS — both by fighting through symptoms and by using their POTS to their advantage. I will be posting about everything from skills I use to combat POTS to routines I use to control my life to what I learned at the Mayo Clinic – with stories of POTS success sprinkled in. 

Let me know what you think of this post, if you have any questions, and if there is anything you would like me to talk about in the future in the comments section. I would also love to hear from you in the “Contact Me” section above. Thank you for reading and please share this post to help reach and inspire others!